I have a rare toxic black mold growing on my brain – it all started after I grazed my elbow on vacation
DOCTORS found toxic 'black mold' growing in a Rhode Island man's brain after he scraped his arm in a bike accident on vacation four years ago.
Since his 2018 trip to Costa Rica, Tyson Bottenus has been plagued by splitting headaches, facial paralysis, and other debilitating symptoms due to an extremely rare tropical fungus that entered his body through the scrape.
Though it's not actually "mold," the fungal infection is nicknamed black mold because melanin gives it dark coloration.
The fungus Cladophialophora bantiana has only had about 120 cases confirmed worldwide since its discovery in 1911 -- and Tyson is one of the cases, after months of painful and puzzling symptoms.
"That was great to figure that out, but it’s not great that I have fungus in my head,” Tyson, 35, wrote in a
A neurosurgeon discovered the growth on Tyson's third biopsy eight months after the agonizing effects started just weeks after he and his fiancé Liza returned from their trip.
Before the diagnosis, baffled doctors had been scrambling to determine what the infection could be after running unsuccessful tests for brain cancer, Lyme disease, cysticercosis, HIV, tuberculosis, and more.
“She called Liza from the OR and said she could literally see a dark fungus with her naked eye,” Tyson said. “A far cry from cancer she had been determined to find.”
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Tyson and his doctors felt confident that the fungus was caused by the inhalation of dust and the injury after his bike accident in Costa Rica because it is a tropical country.
The infection is known to cause brain abscesses in humans, and the doctors didn't have a clear treatment plan for Tyson because the case is so rare.
Cutting out the abscess wasn't an option because the lesion was too close to too many vital parts of the brain.
The doctors decided the best way to treat the infection was to take a combination of oral antifungal medication to attack the mold and dexamethasone, a steroid, to control the immense swelling and buildup of fluid that cause intense headaches and pressure.
In March of 2020, Tyson suffered a stroke that caused serious impairments that required him to relearn how to walk, talk, and read. The doctors later told Bottenus that the pressure inside of his skull was 15 times the normal amount.
LIVING WITH UNCERTAINTY
Through these years of uncertainty, Tyson has felt lonely in his diagnosis and sometimes hopeless in his pain.
In order to live his life more fully, the man enrolled in graduate school, a longtime dream of his. He rides a tandem bike with his fiancé, and he tries not to research his diagnosis too much.
“I can’t escape the uncertainty around my future, but no one can,” he wrote. “I just have to learn to live with it.”
After ten brain surgeries, five spinal taps, and two tubes connecting his brain's ventricles to his abdomen, Tyson feels confident he's going to live for many more years.
A few months ago, his doctors discovered that the medicine he's been taking for the past four years hasn't been helping him kill the fungus because it hasn't penetrated the barrier to his brain.
A new treatment plan has already begun.
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"While the journey to reclaiming normalcy has been fraught, it has taught me how to accept uncertainty," Tyson explained.
"My future remains murky, as soft and dusky grayish-brown as the fungus, Cladophialophora bantiana, itself."
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